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Guest Blogger: Darlene Costner

category_bug_journal2.gif [EDITORIAL NOTE: Darlene Costner does not keep a blog, but her name should be familiar to you from her many comments in the elder blogosphere. When she told me via email that she would soon be getting a cochlear implant and if all went well, would be able to hear again for the first time in decades, I asked her to write about the experience for TGB.

Boomers (and some older folks too) have a higher incidence of hearing loss than previous generations due to too many rock concerts in our past. Darlene’s report will give you a good understanding of this procedure should it be necessary and possible for you or someone you know. So here is Darlene’s experience titled My Cochlear Implant.]

If you are wondering what the heck this is all about I am about to enlighten you. It’s all about hearing, or lack thereof.

When I was in my forties, I incurred an inner ear disease called Meniere’s Syndrome. This can cause dizziness and/or a hearing loss. In my case the dizziness was the first symptom and the hearing loss followed.

I will not bore you with a medical report on everything that happened at that time. Eventually my hearing stabilized and I was able to function without the use of a hearing aid for about ten years. (I did ask people to repeat a lot.) Then my hearing gradually worsened over a period of the next thirty years. I started with one hearing aid and eventually needed aids in both ears. I progressed to needing digital aids and telephones for the hearing impaired. I made the adjustments as they became necessary.

My hearing loss became episodic. There were days when I could understand conversation and I was able to function reasonably well. I had problems in public places with noisy backgrounds but I could understand what was said in a quiet environment.

However, for the last four years there were mornings when I would wake and not be able to understand anything. The human voice was distorted and sounded like a radio that was not tuned in properly. These episodes would last from four to ten days and then I would be able to hear once more.

The good periods grew further and further apart and eventually trickled off to very few good days. I found I had trouble understanding what people said most of the time.

Leaving home became a nightmare. People would be friendly and try to start a conversation and I would explain that I couldn’t understand them. At times I just got tired of explaining and I would pretend to hear what they were saying and smile and nod. I could tell by the expression on their faces that I had smiled inappropriately or I hadn’t answered a question.

This became stressful for me and I stayed home more and more. When I was forced to go out in public, I would take a book to bury my nose in it to avoid conversation. I was not a social butterfly.

A few episodes due to my lack of understanding are now funny, but at the time they were embarrassing. One time my granddaughter, who was about five at the time, telephoned me. I couldn’t tell a single thing she said but I knew that asking her to repeat would be a waste of time so I just made comments like, “That’s nice, Honey. Oh that’s great,” thinking that she was telling me what she had been doing.

When my daughter took the phone back she asked me if I knew what Rachel had been saying. I replied, “Not a clue.” She informed me that Rachel had been telling me that she had been sick. Poor child to have such a mean Grandma to say it was nice that she had been sick.

Another time I had made BLT sandwiches for my son and daughter, who were visiting me. I served my son, who was sitting at the kitchen counter, and turned my back to get my daughter’s sandwich. I heard him whisper to his sister, “Is this all the bacon we get?”

Imagine his embarrassment when I turned back and said, “Oh, do you want more?” The look of confusion on his face was priceless. Once in awhile I heard things that I was not meant to hear.

One Sunday each year, our church had Woman’s Day. I was vice-president of the woman’s society and as such, was required to give part of the service. Included in my part was making the announcements. The president was going to take the same part in the second service.

Before going into the sanctuary, I went in the office to get the announcements. While I was there the president was teasing me and asking me to take the second service also because I would be experienced. While she was kidding me, the office filled up with people and I left.

As I was walking out the door, the president called to me from the back of the office and I thought she was teasing me again asking me to take the next service. I threw up my hands and said most emphatically, “Oh no!” The next day she informed me that she had actually asked me if I would take her little boy home after I was through with my duties. She told me that people turned to her and said, “Well, what’s the matter with Rusty?” How embarrassing. Embarrassment is a large part of a profound hearing loss, I discovered.

Several years ago, I did research on a wonderful new technology called a cochlear implant. This is a device that is embedded in the mastoid bone and inner ear where an electrode array is inserted in the cochlea. A receiver similar to a hearing aid is connected to it and it sends the sound signals to the cochlear nerve.

The device is implanted behind and above the ear and a headpiece about the size of a quarter attaches to it by the magnet embedded in the skull. There are different devices and some require a receiver that is worn on the body. Mine does not.

The surgery is done under general anesthetic and takes from one-and-a-half to five hours. It is normally done as outpatient surgery. Infection at the site of surgery is the thing to watch out for. Should that occur, the patient will probably lose what hearing he/she had and will be worse off than before.

The device is activated (referred to as “turning it on”) as soon as the swelling has gone down after surgery. There is further fine tuning to the device until the patient is able to achieve the maximum hearing possible. Normal hearing will never be achieved and the patient is encouraged to have low expectations.

Prior to surgery, I met with the audiologist to make a selection as to which device I would be implanted with. There are three manufacturers at the present time. Since there has been no study as to the value of one device over another, this selection is a hit-and-miss piece of guesswork.

I had done my homework on the Internet and told her I wanted a device that had been helpful to some in regaining the sound of music. (That sound is usually lost with the implant.) While nothing is guaranteed as a result of the surgery, there had been cases of patients eventually recovering the sound of music after a year of hard work.

After the implant, nothing will sound the same as it did when the patient had normal hearing. Some have described the human voice as sounding like a cartoon voice. Others say everything sounds mechanical.

Once the implant is turned on, the hard work begins. The patient has to train his/her brain to recognize sounds and the implant has to be fine tuned until the best results possible are achieved. This is an endeavor between the audiologist and the patient that usually takes a year, but varies with each patient.

The audiologist gave me a final hearing test to help her in deciding on which side to use the implant. This is a difficult decision, because if the implant is done on the side of the best ear and if it fails the patient will lose what hearing was in that ear forever. For me it is doubly difficult because I had mastitis on the bad ear side; however there was no distortion in that ear.

I had to trust my audiologist to make the right decision because if things go wrong, I would be totally deaf after the implant. It was a time of mixed emotions. I was excited, but also very apprehensive.

Surgery
The day of surgery finally arrived and it was an extremely stressful experience. The audiologist had not done the study and the doctor didn’t know which side to put the implant on. He finally made me choose and I chose the weakest ear when he couldn‘t tell me whether or not I would still have distortion in my best ear. I couldn’t help thinking that if it didn’t go well I would be the one to take the blame. I refer to this as covering one’s posterior.

Surgery was backed up and my operation was delayed for four hours. This meant that I had been without food or drink for 22 hours and I was getting quite weak. My surgery took two hours and I was the last patient to leave the recovery room. I was booted out with hugs from the nurses and two prescriptions - one for an antibiotic and one for pain meds. I had a big plastic bubble (called a cone) on the side of my head that covered the surgical area that was held in place by a Velcro strap around my head.

My implant was turned on (activated) six days after surgery. I had parts of an orchestra in my head. The human voice sounded like a duck quacking along with a very soothing tone. I couldn’t distinguish a single word.

On the second day of my implant, I played the piano. When, to my amazement, I was able to hear my playing without distortion, I jumped up yelling “YES” giving two thumbs up. It’s a good thing I was alone because my friends would have thought I had finally lost it completely.

I could hear what I was playing and it sounded normal with one exception. The keys in the upper register sounded tinny. Since these are sounds in the higher resolution that may never change.

On day fifteen, I could finally distinguish more words and the quacking duck had left my head. I need to practice with a talking book reinforced by the text of the book that I read at the same time. The brain has to be taught all over to recognize sounds and it’s slow work. Some people are able to understand conversation rather soon, but I am a slow learner, I fear. Some people take months and I am hoping I am not one of them.

I had my first mapping on day seventeen. I call this fine tuning the device. It is actually adjusting the electrical signals from the implant to the cochlea. At this first step I ended up with three programs: 1. soft; 2. medium; and 3. loud. Eventually those programs will change to music, noisy places and normal environment. The following day, I listened to a DVD with a vocal. The album had 11 selections and I was able to hear three of them. The rest were just strange noises. I believe that the more familiar music is easier for me to hear and, although I knew the other melodies, they were not as easy to sort out.

It has been 22 days since my implant. Each day I hear more and today I had a complete conversation with a friend and heard nearly every word. My friends will no longer have to shout at me to make me hear. It is going to change my life and I am looking forward to leaving my safe house and exploring the world once more.

[Just because I can and it's fun, I've made this an all-Darlene Day. At The Elder Storytelling Place, she tells the tale from her vantage point of how a famous novel came to be in The Young Authors.]


Comments

Darlene, this is very interesting.
I have some hearing loss (I'm 54) and am at the stage where it is becoming embarrassing. (The other day I had to ask someone at a meeting to repeat herself three times and in the end I had to come sit next to her. Turns out all she was doing was offering her best wishes on a project I had just outlined!)
Last time I had a check up I was told the loss was not substantial enough and a hearing aid would be more of a hindrance than a help at this stage. I go for my next checkup in January.
Very interesting to hear from you what the options might be for the future, and what the real experience was like.
Good luck with further 'fine-tuning' and with your explorations.

Congratulations. I'm so happy for you and wish you continued good progress. I understand the problems you had. My mother started to lose her hearing when she was in her 30s. By the time she was in her late 70s she got a hearing aid for the one ear that she still had some hearing in. The hardest and saddest part of it all was that people sometimes thought she had some dementia because she was old and some of her responses were off just as you experienced. I had to explain that she was either responding to what she thought had been said or she had not heard the latest words and was still responding to what had been said earlier.

How wonderful that it appears to be working!!!! I am happy for you! And you did a wonderful job of telling us how this surgery works.
Thank you and may your progress continue.

Wonderful, wonderful, Darlene. It is a brave person who will take the leap that you took (my younger brother has turned down the surgery for the last umteen years!) Good progress to you!

Wow...I work with kids that have implants and I never realized that it can be also used with older people. Eye opening! Congratulations and good luck with your progress!

Congratulations Darlene. You offer many of us hope. What an exciting thing.....quacking ducks and all.

I realize I should have clarified one thing about Cochlear Implants. They are only done on people who are no longer helped by hearing aids. You must be profoundly deaf and go through several hearing tests, plus a CT Scan to be a candidate.

Tess, do not let them discourage you from getting a hearing aid. If you are having difficulty hearing, an aid will enrich your life. The embarrassments I mentioned are but a few of the many times I didn't hear correctly, even when my hearing loss was not too bad. So I understand what Estelle said about dementia. I have endured being patronized because of hearing loss and I know many thought I wasn't the sharpest quill in the porcupine.

I do not look on a hearing aid as an inconvenience, but a help just as glasses are to the sight impaired.

May you continue to hear more and more. Thank you for writing such a personal, but also very informative post. I am at 50 just about where you were at 50 and so I found your journey particularly interesting.

Ronni
Thank you for allowing Darlene to post this interesting and informative blog.

Darlene, I am amazed by your courage and wish you great success with the implant.

I am almost 78, next week, and my last hearing test showed hearing loss that might be helped with a hearing aid but right now I am delaying getting one. Two reasons. I have heard that geting used to a hearing aid is very difficult and that they are extremely expensive.

I will rethink my decision in the new year.

Darlene, You write so beautifully you need to consider your own blog so we can all benefit from your talent.

Thank you Chancy. Yes, hearing aids are expensive; especially the digital ones. Some insurance companies help with the expense.

I had no difficulty in adjusting to a hearing aid - maybe it was because I wanted to hear so badly. I think attitude has a lot to do with adjusting to them.

The trick is to get a good audiologist. Usually hospitals have the best, and most knoweldgeable, audiologists.

This was wonderful to read. My older relatives have all gotten deaf, so I figure this may happen to me, though no sign of it at 60. They didn't deal well -- waited until very deaf to try hearing aids, got used to nodding (sometimes inappropriately) to try to cover, and ended up just living with each other and yelling.

It is inspirational to read about your taking your needs into your own hands, finding the best available adaptations, and getting on with life. May I have the sense and courage to do the same!

What a great journey. I have a dear friend who is going to have this surgery soon and is absolutely terrified. She'll be very grateful to read this post.

You must be thrilled! I wish I was a candidate for that (and that my insurance covered it!). I have had tinnitus since the 80's and my hearing is rapidly going downhill. I do embarrass myself daily with what I can't hear - or what I mis-hear.

I am so happy for you, Darlene, and hope that each day becomes better and better. I had an aunt who became legally deaf as a young child when she contracted meningitis. That would have been around WW I. She went on in life but we often had talks about whether it would be worse to be deaf or blind. She thought deaf, of course.

The science of hearing has dramatically improved and you are living proof of that. Thanks so much for sharing. Like Kenju, I have had tinnitus for more than 25 years and my hearing is getting iffy, but so far, so good, especially when I hear how awful it had become for you.

My mother had a cochlear implant this year too. It seems that if you have "the right kind of deafness" the implant can work wonders! I'm pleased for you Darlene! This weekend I've had the first ever nice long phone conversation with my mother on the phone.

Thank you for sharing this. And the best of luck to you.

Great to hear that you can hear again. I write a column in the
West Seattle Herald
(surf the web and click columnists and then go into the archives if my column doesn't pop up in any one week)
and I have written about the problem of Baby Boomers listening to too many boom boxes and loud speakers at rock concerts.

I have urged my city council and my state legislators to pass some
regulations about noise pollution.

It took many years to get our state smoke free in public venues but noise pollution has never been eliminated. I am going to keep trying.

After living through my husband's not wanting to wear his hearing aids and having to have them repaired and constantly cleaned and upgraded, it would be great for him to finally hear without them.

Excellent article Darlene. Lots of important info here from people with hearing problems from which all can learn.

I find your successful response exciting and hope you keep us apprised of your future gains.

Just to clarify, Georgie Kunkel's comment, cochlear implants are only appropriate for certain types of hearing loss.

I certainly applaud Georgie for efforts to have the community address noise pollution issues. Too little attention is paid to this problem.

What an amazing story! Thank you so much for sharing all of this with us.
I had a hearing problem as a child, had surgery and now at 60, while my hearing isn't excellent, it's okay. I'm wishing you all the very best with your post-op recovery. I'm an RN but have never had a patient who had this surgery, so I found it all quite informative. Please keep us posted on your progress and all the best to you.

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